News and commentary on the autism epidemic and my beautiful boy who is living with autism.

October 23, 2006

New York Magazine: The Autism Clause

The Autism ClauseA handful of new schools charge up to $140,000 a year to educate an autistic child. Who can pay that much? Anyone with the right lawyer.By Alyssa Katz

It’s not entirely clear what’s wrong with Jasir Abdullah-Musa. When a fire engine screams by, he cries. When a fly buzzes into a room, he descends into tantrums. At his family’s home in the Flatlands section of Brooklyn, he flings his chubby 5-year-old body from couch to couch, ramming his head into the cushions and shifting between twisted poses. Jasir has a habit of recounting his daily routines ad infinitum—down to the color of the stripes on the bus and the menu at McDonald’s—but as he sizes up the stranger in his living room, he doesn’t say much, except to bellow “I want Rollos!” and “Noooo!”

If his mother, Melissa Glasgow, had accepted the Department of Education’s contention—that Jasir is simply language-impaired—he would be in a public-school special-education class with two teachers and eleven other kids with motley disabilities.

Last spring, however, she went searching for alternatives—and wound up in an office building on East 30th Street that would soon be home to the Rebecca School, a new for-profit academy for autism spectrum disorders—classic autism, Asperger’s syndrome, and the vague PDD-NOS, short for “pervasive developmental disorder, not otherwise specified.”

Jasir interacted with the school’s chief psychologist while Glasgow fantasized about the amenities: a video camera that wired to a central TiVo-like system, for ready replay to parents; a ceramics studio and music room; lights that don’t buzz or flicker; two “sensory gyms” full of swings and ropes and trampolines.

After a few hours, Jasir was invited to join the school, with promises of eventually being mainstreamed out of special education altogether. The tuition would be $72,500 a year, but the Rebecca School’s representatives insisted that that wouldn’t be a problem for Glasgow, who fields customer complaints for the MTA.

An administrator from the school handed Glasgow a folder and pointed to a page inside. “If you want to come here,” the rep said, “you ought to call one of these people on the list.” It was HEADED REIMBURSEMENT FOR PLACEMENT MADE BY PARENTS IN A PRIVATE SCHOOL. Below was contact information for five lawyers and basic instructions on how to sue the city of New York.

New York City’s open checkbook for autism is at the heart of the business plan for the Rebecca School, the latest in New York City’s fastest-growing chain of for-profit educational institutions. When it’s fully booked, perhaps two years from now, Rebecca will enroll 200 kids, making it the first megastore in a circuit of tiny boutique schools. The company launching it, Manhattan-based MetSchools, Inc., has spent $7 million to renovate 52,000 square feet of midtown office space (previously home to New York’s biggest abortion clinic).

MetSchools CEO Michael Koffler, 50, is not an educator himself but a graduate of suny–Buffalo who majored in accounting and business administration. He has a Queens accent that twists its way around spools of special-education jargon, and a commonsense profit model: He finds niches where New York City’s overstretched public and private systems have failed to tread. Like any business, it needs a revenue stream, and Koffler’s comes from city and state government.

His entrepreneurial strategy is rooted in the national reforms sparked by a 1972 exposé of Staten Island’s hellish Willowbrook State School, which shocked Congress into making sure disabled kids got a formal education. (At the time, nearly 2 million didn’t.) The result was a new law entitling all children to a “free and appropriate public education”—or a city-funded private one.

Realizing that there was more government money for disabled children than there were schools to serve them, Koffler and his wife, a speech therapist, opened the Sunshine Developmental School, their first special-education academy, in Queens Village in 1986. It started with just twelve children, ages 3 to 5, providing various therapies—speech, physical, and so on—to help developmentally disabled kids catch up with their peers. Today, the school, now located in Jamaica, enrolls more than 300 and collects $21,821 per student from the city each year.

From Sunshine, the Kofflers developed a thriving business out of what would seem to be a ruinous venture: educating poor kids. They proceeded to open other schools for children with special needs in Bedford-Stuyvesant and Williamsburg, among other neighborhoods. The government revenue streams multiplied, with payments from the city’s welfare agency, the Board of Ed, and the Administration for Children’s Services—adding up to at least $79 million in all.

In 2000, Koffler set his sights on the wealthy, finding baby-boomlets around the city where schools hadn’t yet caught up—like the financial district, where he opened the Claremont Preparatory School last year, with an annual tuition of $26,500 and room for up to 1,000 kids, though enrollment falls far short of that now. He briefly extended his reach to become lead partner in a chain of preschools in Georgia and North Carolina, then sold it off after trying for an IPO. (Koffler claims he lost $2 million on the deal.)

There’s a reason one of Koffler’s role models is Alexander Hamilton, the great capitalist who created the nation’s first federal programs (to support the banking industry) and pushed new taxes to finance them. Koffler has done very well in the usually not-so-lucrative business of publicly funded education. He lives in a midtown penthouse with river views, and last year donated $1.25 million to endow the Michael C. Koffler professorship in autism at Pace University. “I’m a hardworking kid from Queens,” he says.

The Rebecca School, which opened this September, drew its first class of 48 students from all over the city, the suburbs, and as far away as Shanghai. When filled to capacity, the school will gross more than $14 million a year, and Koffler projects that he’ll start earning a profit in two years. He expects that all of his students will sue the city for tuition reimbursement, though he estimates that only half are even aware that they can when they first walk in the door. “It’s always welcome news,” he says.

What’s most surprising about Rebecca is not the $72,500 tuition—or the fact that it’s a for-profit enterprise—but that it remains a relative bargain among autism programs. With a Wal-Mart-like economy of scale, Koffler is able to economize by assigning two children to every teacher or assistant, rather than the one-to-one ratio standard among elite programs. “When other schools are charging $80,000, $88,000, $120,000,” Koffler asks, “wouldn’t the right response be to go with our system?”

This year, the New York City public schools have budgeted nearly $824 million to pay private schools to educate children the system can’t help, up from a little over $82 million a decade ago—in part because of the national autism explosion, a phenomenon nobody can explain. (The latest theory, out of Cornell University, suggests a link to television-watching among children under 3.) In the eighties, the U.S. Centers for Disease Control estimated that 1 in 10,000 kids would develop some form of autism; now the rate is 1 in 166, or about 750 born every year in New York City.

The Department of Education reports that there are 4,423 autistic kids in public schools: Educators’ experience in the classroom suggests numbers as high as 15,000. Most wind up in special-education classes, alongside emotionally disturbed and mentally retarded kids with one teacher for every six to twelve students, at an average cost to the city of $34,816 a head. It’s the rare autistic student who receives specialized behavioral therapy, even though the New York State Department of Health recommends it as “an important element of any intervention program,” to be carried out by a trained therapist between 18 and 40 hours a week.

“It’s not just ‘Hire a lawyer and win.’ It’s ‘Ask for a hearing and win.’ ”

In addition to special-ed classes, there are another 732 spaces for children on “the spectrum” in a handful of state-regulated private schools that have a tuition cap of $48,000 a year, covered by the state and city. But those schools tend to be picky about which kids they’ll take: cute recitations of every stop on the J train, yes; banging head on desk while moaning, probably not.

That leaves parents of spurned children scrambling to find an education wherever they can—Jersey’s famed Alpine Learning Group, their living room, now Rebecca—and then sue the city for reimbursement. The tactic is not unique to autism—more than 4,700 special- education suits a year are filed against the city on behalf of kids with all types of learning disabilities, about two-thirds of them seeking private school. (Compare that with Chicago, where about 150 parents sue, though the number of autism lawsuits is growing there too.)

Four years ago, when the city was spending $13 million annually on special-education lawsuits, the then–school chancellor Harold Levy pleaded with the President’s Commission on Special Education to intervene to stop what he called “abuse of the system.” “Parents see the opportunity for their child’s private education to be paid for at public expense,” he railed. Last year, the city paid out $53 million on those same special-ed lawsuits.

Critics of the current system—and there are many in the education community—contend that most of those payouts are awarded to parents who are deft at working the system and affluent enough to pay $450-an-hour lawyers on the gamble, a pretty good one, that they’ll get it back. Even current school chancellor Joel Klein admits as much: “No doubt there are inequities based on people’s ability to navigate the legal system,” he says.

Most cities and suburbs, including Westchester and Long Island districts, manage to offer some semblance of appropriate education in the public schools. Parents of kids with autism outside New York can and do sue, but as likely as not, they lose. “You go to suburban school districts and it’s a rarity they can’t provide the right services for a child,” says Regina Skyer, a social worker turned special- education attorney.

The Autism Clause

New York is renowned as one of the only places in the country where parents who buy legal help can count on winning. Usually, lawyers never even have to prove the failings of the schools themselves, because the Board of Ed has missed some basic step, like putting together an education plan for the child (also required by law). Skyer ticks off a few other typical bureaucratic screwups: “They don’t hold meetings, they lose files, they don’t have mandated people at meetings, placements are not made in suitable groups.” Usually the educators who attend the legal hearings have never met the children.

In the past two years, the city has opted to pay 50 settlements of over $100,000 apiece—almost all for autistic kids—instead of fighting to the death in court. The city comptroller’s office rejected just one: a settlement of $387,400, for one year of therapy. “It’s not just ‘Hire a lawyer and win,’” says John Farago, a hearing officer who issues decisions on autism cases. “It’s ‘Ask for a hearing and win.’ ”

Attorney Gary Mayerson has a practice suing the city on behalf of autistic children. (Photo: Courtesy of Gary Mayerson)

Six years ago, commercial litigator Gary Mayerson put out a shingle on West 38th Street and now has a four-attorney practice suing New York and other school districts for private education for autistic kids. For the 2005–2006 school year, Mayerson had 257 such cases—and has lost only two. “These are the cases where I still need to collect attorneys’ fees,” he says, pointing to a thick stack of purple folders on his desk. The Department of Education will pay for those, too.

Although Mayerson is on the Rebecca School’s go-to list, many of his clients come from the five-year-old McCarton School, a private autism program on the Upper East Side that charges $84,000 a year and advises its 23 kids to participate in personalized after-school programs that cost anywhere from $18,000 to $56,000 more. McCarton has a waiting list 127 names long; one family moved to the East Side from eastern Connecticut just to attend the school. Others have relocated from England, Colorado, and Texas. All can now get the city’s Department of Education to pay the bill.

Students who don’t attend the school can hire its founder, Cecelia McCarton, to perform an autism evaluation. It takes three months to get an appointment. Then, for about $2,500, she’ll do up an impeccable dossier on a kid’s issues and needs, a lethal weapon for any litigation to come and another expense the city winds up paying.

Mayerson also represents parents who homeschool their kids, hosting a parade of professionals each morning for some $80,000 a year. And some are starting their own schools. In a stucco house off Brooklyn’s Ocean Parkway, formerly home to a large Orthodox family, Imagine Academy offers kids daily yoga and a “sensory spa” where they can calm down by staring at soothing lights. “We decided we’re going to put in all the things we ever dreamed of and never got,” says Rebecca Harary, one of ten parent-founders. Her school has 28 staff for thirteen children and, like Koffler’s school, it’s hired as a consultant Stanley Greenspan, a Maryland doctor who has created his own proprietary method of autism treatment. Tuition there is $70,000, not counting after-school therapy.

“It might cost a million, a million and a half to save a kid. You’ve got kids going to schools that cost $20,000, $30,000, or $40,000, and they have worse outcomes.”

“It might cost a million, a million and a half to save a kid,” calculates Mayerson. “You’ve got some kids going to schools that cost $20,000 or $30,000 or $40,000, and they have worse outcomes. Wouldn’t you rather pay $100,000 a year for a few years and get a great education and productive members of society? Do the math.”

Mayerson doesn’t dare say autistic children can be cured. Rather, he prefers to say they “can be functionally remediated, so a child can be indistinguishable from other children.” That’s the hope Maggie and Robert Eigen hold for their son, Jake, a 7-year-old diagnosed with PDD-NOS who attends the McCarton School. On a recent day, Jake’s $46,000-a-year after-school program went something like this: At 3:15, a half-hour after the official school day ended, a young teacher named Jayshree Patel took Jake to play in the fountains at the Museum of Natural History, and then jumped in a cab with him to head for a trim at Cozy’s Cuts back on the East Side. At 5:30, she handed Jake off to his second teacher, Abi Leibovitch, who also works at McCarton during the day. First they wandered through the lobby of a movie theater on East 86th Street, where they’ve been working on making Jake less scared of big, dark spaces. Then they moved on to Logos Bookstore on York Avenue, where he tried pulling every kids’ book out of the rack, then to the diner on the corner of 86th for some ice cream.

The Autism Clause

This routine, which carries on most afternoons, year-round, can look like babysitting, and some of it is. But the deeper agenda is behavior modification. Jake’s parents—his mother is a nursery-school teacher with a master’s in early-childhood development, and his father owns a jewelry shop and a wine store on Madison Avenue—say McCarton’s “Applied Behavioral Analysis” therapy is the reason the family recently was able to take their first weekend trip since he was a toddler.

Jake can speak in brief sentences now, if you prompt him the right way. He shines with a charming if spacey smile; Maggie says he’s no longer the withdrawn creature who used to stand by the slide in the playground because he couldn’t figure out how to climb up. “In the past two years,” says Robert Eigen, “our life has changed.”

Jake’s transformation has cost $130,000 a year, and his parents have successfully recouped all of it from the city, Maggie Eigen says.

“What McCarton is striving for, a home program integrated with a school program, is a wonderful gold standard,” says Dr. David Salsberg, supervisor of pediatric psychology at Rusk Institute at the NYU Medical Center and an expert witness in tuition lawsuits against the city. “The downside is that this is a tremendous expense.”

Jake’s six-figure schooling may be harder to come by in the future. Last year, Chancellor Klein, who complains that too many lawsuits result in private-school placements, hired ten lawyers specifically to fight special-education claims. Also, the U.S. Supreme Court recently ruled that parents have to prove the public system has failed before they can go to private school. Koffler is certain that those reforms won’t affect him much. “If you do the right thing,” he declares, “why would you worry?”

As evidence of progress in public schools, Klein also points to 46 new prekindergarten autism classes and the year-old New York Center for Autism Charter School, the city’s first such program, on East 101st Street. There, teachers deploy behavioral drills, hundreds of them every week, to train seventeen autistic children to stop flapping their hands, or ask to go to the bathroom instead of in a diaper. They get rewards—some pretzels, some Gameboy time—for new tasks mastered. The school gets $62,000 a year in public funding per student and raises an additional $20,000 each from charity benefits like Jon Stewart’s recent “Night of Too Many Stars” at the Beacon Theater, which attracted comics from Sacha Baron Cohen to Steve Carell.

“The idea that parents should sue—it’s going to break the bank,” says the charter school’s co-founder Ilene Lainer, a labor-management lawyer from the Upper West Side and mother of an autistic 9-year-old. “The answer is to create programs that are publicly run.” Lainer knows the alternative all too well. Up until her son Ari landed a spot in a state-approved private school this year (he lost the lottery for a place in Lainer’s school), he spent five years alternating between her living room and a private academy in New Jersey. How did Lainer pay? She sued the city.

2 comments:

It’s true that lot of schools for autism are charging a large amount of money from the parents of autistic children. People are unable to pay this much amount of money. I know a School for autistic children in New York who charge a very reasonable amount of money and take full care of children’s special needs. If your child is autistic, consult this school. You can also request free info or tour from them.